This letter may be long overdue. Perhaps I should have penned it twelve weeks ago when you first paid a visit to my sweet, gentle blue-eyed boy. But I wouldn’t have known what to say 12 weeks ago. You caught me off-guard. Three months later, I still feel as though I am at a loss, but there are nonetheless a few things I’d like to say.
According to my son’s neurologist, she’s having a difficult time catching you. She called you “elusive” and said that you’re progressing. I am not entirely sure why you need to be, to do either, why you continue to wreak havoc with my son’s tiny body, why you have even come in the first place.
You have visited many–Edgar is surely not your first and won’t be your last. And while I have tried to be patient, tried to be understanding, I am not happy with you.
This morning–despite all the valiant attempts by very intelligent, very competent experts to keep the seizures away–you stopped us all in our tracks once again.
Every time our son has a seizure he is at risk–not just for his physical safety at the moment but in terms of the health of his brain. And, you know, he only gets one brain. I want to protect it, to keep it safe.
But you’re not letting me. You fight me. You fight him. Every time we make a move, you make a counter-move. And for the moment, it appears you’re winning.
However, at the risk of incurring your wrath even more than we have thus far, I will tell you that we will fight–tirelessly, undauntedly, and until we win. Because you, epilepsy, will not define our son. He may have to keep company with you for the time being–or for the rest of his life–but that is all.
THAT is all.